Thursday, October 20, 2011


I love my new rheumatologist. If it were closer to Valentine's Day, I would give her a valentine. She got an MRI of my hinky hip, whereas my last rheumy would only x-ray it and proclaimed it "fine." Yes, the bones in it were fine, and it was not actively dislocated. What it did have was a case of bursitis and peritendinitis. This is my third recurrence of zombie bursitis, right in time for Halloween. Another steroid injection. My rheumy offered to send me to PT, but I politely declined. Until I find a therapist who is familar with EDS, I'm boycotting PT and maintaining myself on thrice weekly pilates. I asked her to send me to OT instead.

As one of the benefits of being under my mother's new insurance, I can get reimubursed at 80% for silver ring splints.
So I've begun buying those, beginning with the EDS splints for my knuckles which have been in terrible pain, especially when the weather turns cold and rainy. The pointer finger on my right hand has been throbbing so bad, I expect to look down and see that it's three times its normal size. I can't wait to put an EDS splint on that bad boy.

One of the things Dr. Francomano told me to do when I saw her last summer was splint my fingers, but I decided to blow that off. Definitely not a mistake I'll make again. By my calculations, I'll need seven splints. After insurance, I'll end up paying $250 total. Not bad at all.

In general, my autonomic dysfunction has always far exceeded the severity of my joint complications, but my joints are making it clear that they want to join the party.

On the autonomic side, my stomach hasn't been working correctly. Every time I try to eat a whole meal it results in hours of nausea and sometimes vomiting and the rest of the time I have no appetite. I've been getting the bulk of my calories from Starbucks coffee. I've tried every OTC product I can think of. It's definitely not constipation, if only because I know nothing is down there. I can't run on caffeine and desperation forever, so I hope my body will hold out until my next appointment. I don't know if it's gastroparesis, that scourge of many an EDSer, but I certainly hope not.

That's what's on my EDS menu for the month of October, in the middle of my favorite season, fall.


This is the view from my bedroom window. A few scattered autumn leaves under a crisp blue sky. As a girl, fall meant new clothes, new shoes, new school supplies and seeing all my old friends. I could look forward to my birthday and my favorite holiday, Halloween.

Nowadays, I just like the coolness and the smell of the air, the shock of orange and red leaves against the sky, the subtle shift of the constellations edging toward winter. Nothing can ruin October.


Shoshana said...

Yvette, I just came across your blog and read through all of your posts. I also have EDS, also the "mild" classical type, and I grew up in Cleveland, too. I think your blog is well written, witty, and honest. It is horrible that your level of pain management has been so poor. I am around your age, and I am very familiar with drs refusing to believe that we can be in so much pain. Thankfully, my pain management is currently adequate (not wonderful, but adequate). I also have gastroparesis, which definitely sounds like what you describe above. I see a gastric motility specialist, which is a subspecialty of GI. I hope yours can be treated more easily than mine: I have to run TPN every night through an IV port. I am able to eat a bit, but not enough to sustain me.

I currently live in Cincinnati, and ended up here by happenstance, without realizing that there is such a large amount of people with EDS here. I have been lucky enough to have seen Dr. Tinkle and Dr. Durrani. Dr. Durrani has a new pain management doctor working with him now. As you've mentioned, it is important for one's doctors to understand EDS.

I would love the opportunity to talk with you more. Also, if you are around Cincinnati, my family and I would be happy to offer you a place to stay. I enjoy reading your posts. I hope you are able to continue writing them.

Yvette said...

Hello Shoshana, (gorgeous name!)

I am strongly considering making an experimental trip down to Cincinnati to see Dr. T. for a consult. My health problems just seem to be multiplying as I get olde, and I feel in over my head. When I got a letter that one of the doctors I actually like was leaving his practice to pursue opportunities elsewhere, I cried like he'd broken up with me.

I'm really happy you like my posts and I'd like to talk to you more as well, especially about GI stuff and other more pleasant things. I think I know which Shoshana you are, so I'll add you on Facebook if I can.

erinj0 said...

I feel you in regards to getting a lot of your calories from Starbucks (coffee in general) - The GI problems that EDS scars us with are relentless. I hope you have more "good" days in the last couple months of the 2011 year!

Take care :)

Anonymous said...

Hi, I have EDS III, came across your blog. Hope your doing OK. I also love autumn, you have a great view for the season.

Yvette said...

Erin, yeah what is it with the GI tract in EDS? Looking back, my stomach has been sort of weird ever since I was a little girl so I suppose I shouldn't be surprised that it's being extra weird now. Even so, to be sick over the holidays isn't something I look forward to. I want nothing more than to put this behind me.

Hi, anonymous friend. Fall is such an underloved season. Here in Cleveland where it's a little bit hilly as it begins to run into the foothills of the Appalachians, it's beautiful when the leaves change. I love it.